2013

At this time last year I was out of my mind. And the worst part was that I didn’t know it. It was just another day in the life as far as I was concerned. I knew I was depressed, that was obvious, and I cried wildly for sometimes hours a day. I had a day job (this was pre-Ebert, and pre-my freelance writing career kicking off), and, looking back, I am amazed that I was still able to get my ass to work every day. But I was white-knuckling it, and I know how to do that. The thing about being out of your mind is that there’s obviously not a clear line in the sand, where you are suddenly somebody else, or you’re thrashing about insensibly. Life goes on. You’re looking at things through a warped mirror, but you don’t know it’s warped. What you are seeing comes across as reality. I’ve been living this way my whole life.

In around November or December of 2012, as I started spinning down, I remember thinking to myself, almost flatly, it was totally matter-of-fact, “I’ll be feeling better around May, probably.” 5 months. I know the drill. This wasn’t my first time at the rodeo. But I knew I was in for a rough haul and I needed to hunker down. At least I was going to Memphis. I looked forward to that. I do well in hotel rooms. The cares of everyday life, even of my identity, get washed away, and I am left blank, pure. Things feel different. In the state I was in, my family did not want to let me go to Memphis. But from my perspective it was perfect timing. Why is everyone so worried about me? I’ll be feeling better by May! was my perspective.

I realize that the word “normal” is a trigger for some and you are not supposed to use it. What is normal anyway? It’s meant to take the pressure off of those who feel they don’t fit in. I understand that but for me, now, when I’m feeling better than I’ve felt ever, “normal” is a good word. It’s bracing. It helps me realize the illness, it helps me to perceive it, whereas before I couldn’t see it at all. After all, I only know what it’s like to be myself. Saying to yourself in December that you know you will be feeling better by May is a red flag that something is wrong. “Normal” people who do not suffer this way do not go through such things. They have emotions, but they have more resiliency with said emotions, and they are not completely flattened for months at a time. Don’t even bother arguing the opposite. It’s offensive. It’s important to actually listen to those who suffer and stop making inappropriate comparisons. (“I know what you feel like. When Bob and I broke up, I was super sad.” You know, that kind of thing. I am talking about illness, not sadness. This is why mental illness is so misunderstood and feared, but if people would just LISTEN more! Lecture over.) From inside my own head, that kind of timeline WAS normal. Please, I’ve been through worse, I went through 1994, I went through 1998, 2002, I went through 2009, the mother of all bad years, I’ll make it through this one.

I arrived in Memphis the day after Christmas to four phone messages, one from each family member. Everyone was holding back tears, everyone was saying how worried they were, everyone was rallying around me telling me I was sick and needed help and they would help me get help. I was extremely embarrassed. I am a grown woman, I live on my own, I make my own way, I am responsible and independent. I have never bounced a check. I honor my agreements. I’m not a total fuck-up. Nobody was saying I was a fuck-up but it is hard not to hear it that way. However, my family had obviously ganged up on me, and made a plan to all call me at the same moment, while I was airborne, and so it was an onslaught of love and concern and I knew that … well, I just listened. I didn’t throw the phone into the nearby garbage can. I listened.

When I returned from Memphis, which had been a real respite, I went back to work (again, the mind boggles) and in a day or so I had plummeted to the bottom of the ocean. Emotions are on a bungee cord, in other words. I staggered through life. I don’t remember much of it. But everything was “out” now, which actually was freeing. It is embarrassing to admit you need help and I am not sure I would have if my family hadn’t turned themselves into a SWAT team behind my back. I was faced with a choice: accept help, or reject help. If I rejected help, there would be consequences. I suppose it’s like an intervention with alcohol or drug addiction. I can be quite forbidding and I am very proud. But at this time last year, I was too tired. I was broken down. I couldn’t fight it anymore.

My cousins were also involved in all of this. My whole giant Irish family was involved. It was mortifying. I was scared of all of them. I remember starting to cry at the gynecologist’s office during my regular checkup. It was super dignified. My doctor was very nice and I asked if she could give me a prescription for antidepressants since obviously I needed them. She wrote me up a scrip.

This was in mid-January last year. Now that I know more about the illness that I actually have, it is a bit annoying to realize that what was happening was text book. Dammit, and I thought my misery was original!

And I know now how dangerous the situation really was. For those with my diagnosis, antidepressants are extremely dangerous. We are often mis-diagnosed as having either depression or anxiety. Also: this was my gynecologist. She’s a doctor, she listened to what I had to say, and she gave me a scrip, and told me to call her if I had any problems with the medication. But it’s chilling to think of what might have happened if I had actually filled that scrip. I would have been taking the meds without anyone monitoring me. This is often how it goes with “us”. But what antidepressants do to “us” is to take that which is at the bottom of the ocean and fling it up into the stratosphere in one fell swoop, and the dramatic change can often bring on psychosis and suicide attempts. Basically, it’s like the cloud cover pulls back in 1.2 seconds revealing a blue sunny sky, and while yay, that might be happy, it often leads to complete mania, as well as renewed energy to follow through on all of those “Maybe I should just slip into the tub and open a vein” thoughts. Very very dangerous. Mood disorders are still not very well understood, although progress is being made. One of the “tells” that depression is not the real issue to a doctor (who is paying attention, that is) is if the person put on antidepressants feels better in a matter of days. With classic text-book depression it takes a couple of weeks to feel the effects (which is, of course, agony, to the depressive who needs to feel better NOW). But with my diagnosis, we bounce right back. It SHOULD be a “tell”, anyway. A doctor put me on antidepressants in 2002 and I felt better in 3 days. Like, skipping down the street better. And this was a psychiatrist, who was monitoring me. That should have been a “tell” to her. I could have been diagnosed way back then. I should sue for malpractice, honestly. I’m still angry.

I had my prescription and I was also trying to find a therapist, which is not easy when you are basically Googling “I’m cray-cray, please send help” from the bottom of the ocean. You can’t even make this shit up but before I popped my first pill, I got a text from my cousin saying, “I just talked to so-and-so” (her uncle, who is a psychiatrist specializing in mood disorders who knows our family history) “and he says to not go on antidepressants, whatever you do.” I felt completely helpless and not able at all to manage the situation. I needed to feel better NOW. I was in agony. It’s impossible to describe. Like, all you can do is pace and wring your hands. For hours. So I had a three-way phone conversation with my cousin and this uncle (whom I have never met, but I owe him my life). Bless my cousin’s soul, she took notes for me, throughout. And asked the questions that needed to be asked. Because I was too out of my mind to ask questions. She was there, asking him to spell stuff, asking him to clarify, prompting me to “tell him about such-and-such, Sheila.” He was calm and cool, and did not diagnose me over the phone, but spoke to me about our family history and how these things work, and he said some scary words that were unfamiliar to me (but now have entered into my lexicon, no biggie, I can talk about them all). He gave me some website recommendations, he gave me some next steps (all of which were daunting, including finding a doctor), he warned me about antidepressants, and he told me to keep in touch. We talked for a couple of hours. When we hung up, I actually felt better.

There is a peace that comes when you give up, when you decide you need help.

My cousin who had set this up re-hashed it with me, underlining what she thought was important, underlining things uncle said that she thought I needed to keep in mind. I needed that. It would have all been a wash without her.

So I threw away the antidepressants. Thank Christ. I reached out to someone who I knew could help. We had a long conversation. He was understanding, he’s been there. He hooked me up with his doctor, who was in New York. I hated every second of this process because with every step I was moving away from Life as I had lived it. That life may have been filled with anguish (not always, but often enough), and an almost superhero-level of power to white-knuckle things, but it was what I knew. It was how I had lived since I was a child. I had been in therapy for 7 years, in my late 20s, early 30s. I went down into two troughs under her watch, and apparently no red flags were waved for her, and she’s another one I want to sue for malpractice. I am extremely anti-therapy for that reason. And here I was strolling back into the therapy landscape. But this felt a little different. I wasn’t talking to some chick in a nice office about the stresses of my week. I was talking to a medical doctor who specialized in moods. It made a difference, especially since I walked into this whole thing with a justifiable chip on my shoulder about the usefulness of therapy.

It is only with perspective, and a REAL respite, doctor-ordered, that I can even perceive how bad things were. You just can’t see it when you’re in it. So I made an appointment with this doctor. He told me later that after talking to me for the first time, he was “very worried” about me. Again, for me, misery like this is just another day at the office, so I had no perception that anyone should be worried about me at all. His office was warm and inviting and I still feel myself relax automatically when I walk through the door. He asked me questions. I answered. I was honest. He gave me a form to fill out. We talked for an hour. Before I left that room he told me what he suspected, in terms of a diagnosis. It was too early to say for sure, but all the signs were pointing in one direction. It was pretty devastating. But I listened, trying to take it in, and he also told me that I was extremely rare. Like, 1% rare. I’ll get into what he meant in a minute. After hearing my history, he told me he thought I had been walking around undiagnosed for almost my whole entire life (since age 12, although it probably showed up before then). People who are undiagnosed with my particular illness do not end up well. They are drug addicts and alcoholics, mainly. They have been in and out of psych wards. (I realize now that I should have been hospitalized in both 2002 and 2009.) People with this diagnosis are impulsive sexually, which leads to all kinds of problems, medical and otherwise. Humorous side note, and it may be offensive, but it’s also why it’s funny. I was emailing with Michael recently about all of this, and I said, “People who go undiagnosed for as long as I do are usually raging alcoholics, in jail, or promiscuous sluts. I am none of these things, although sometimes I wish I was that last one, because at least I’d be having some fun.” Michael responded, “You would’ve made a fine promiscuous slut. That should be your only regret, and it’s never too late for that, you WHORE!” I take it for the compliment that it is. Not every ex could scream “you WHORE” and have it come across as a fond endearment but Michael can. I’m still laughing about it.

So anyway, with undiagnosed people they get into self-medicating early on, and by the time they actually get diagnosed they are full on addicts. The addiction has to be handled before the illness can even be addressed. I don’t do drugs. Never have. I drink (well, not anymore) but certainly not to alcoholic bar-fly levels. If I look at the drinking, then I can see that since 2009 I had been drinking more, and now I can see it was expressly to handle what was going on inside. I rarely got drunk. I don’t go to bars, I don’t “party”, I’m not into that. But the alcohol was serving a purpose: My baseline mood was so low, that even a couple glasses of wine felt like they yanked me up to other people’s baseline, which wasn’t so low. I could probably illustrate this with a diagram or graph if I knew how to create one. There was also the sugar factor in wine, which is key, and is the main reason I don’t drink anymore. Sugar is very important, and must be avoided with my diagnosis. We crave the high in a way that others might not even perceive or understand. It’s not about the BUZZ from the wine, it’s about the SUGAR.

But the drinking I was doing can’t hold a handle to what other undiagnosed folks normally do. These are lives filled with wreckage, both from the addiction and from the illness. They can’t hold down jobs. They’ve been in jail. They are homeless. They are alcoholics or junkies or coke addicts. And, actually, more often than not, they are NONE of these things, because they are fucking dead.

I don’t fit in with any of that. And I have been living undiagnosed since I was a tween. My doctor said to me, “You are a walking miracle”, and hearing him say that … it bolstered me up for the fight ahead. He reminded me of how strong I am, how much I have held on, how much I have NOT gone off the rails, through sheer white-knuckling will power. This is something one needs to hear when one is as broken down as I was. I almost wasn’t sure that he had actually said those words, so I wrote them down in my journal just to have a record of it. So I could recall it if I needed it.

The track record for people like me is shattering, the statistics are terrifying. Even now, with all the books I read, I get a chill looking at the way these things normally go in black-and-white, with pie charts, etc. In the beginning, I didn’t understand how rare it was, that I wasn’t an alcoholic or a drug addict. Now I get that that very fact is also the main reason that I “took” to treatment as well as I did. I didn’t have all that other shit in the way. I could get down to business. There were no addictions to manage. The second I got diagnosed, I stopped drinking altogether. I don’t miss it at all, not even when I go to parties. It just wasn’t a big part of my life, ultimately. So it’s funny, as I’ve gone through this process, as I have come into contact with other doctors who know the track record for this diagnosis, all of them almost look at me like I am an endangered species. “Well, I don’t do drugs …” “That is ….. amazing. I hope you realize that.” Back to the whole “normal” conversation: it is helpful to know what is normal and what is not normal. It is helpful to know what things NORMALLY look like, so that I can understand where I differ, or where I intersect.

I started treatment with this doctor. I was angry with him at first, telling him I “would walk” if he told me I had to stop writing or loving movies or having crushes on actors. I seriously was afraid he would want to iron me out, homogenize me, take away what was me. One notable comment from my second session with him, was me saying, like I was fucking Jimmy Cagney: “If you tell me I need to give up Elvis, then you and I are done.” I meant it. He was unruffled, said calmly, “Elvis has nothing to do with the illness. Once you get the illness handled, you will actually be MORE productive with your projects.” I was unconvinced, said, “Huh.” rudely. But we got through that phase pretty quick. I am sure that was all “text book” too. My mother came down and stayed with me during this process. I was still out of my mind, sleeping 4, 5 hours a night, and crying randomly and wildly. I honestly needed to be taken care of, even though I didn’t really have the presence of mind to ask for it, or even perceive the need.

Humorously, as in, Life sometimes happens this way although it seems totally phony-baloney: the day I got my proper diagnosis was also the day I got my first email from Roger Ebert, offering me a job.

Same day.

Honestly, life? For real? You couldn’t give me one day in between those two events? No? Same day?

It took two months of intense treatment (with the doctor, as well as with a therapist) to stop the progress of the downward spiral. I can only see that now. If I could put it into an image, it would be that of snapping a jump rope so that it buckled like a whip, and the curls of the rope wave up and down, until someone on the other end grabs hold of the rope, pulls on it, and the rope goes straight. That’s what those two months felt like. Someone jerked on the other end of the jump rope, and everything went straight. For the first time in … ever? It was unbelievably obvious. It was only through a calculated process of sleep recovery, started in mid-April, that the clouds actually cleared in a way that, honestly, they’ve never cleared for me. I haven’t slept over 6 hours a night in about 20 years. This has devastated my emotional resiliency, perhaps permanently. But the brain can recover. Sleeping 8 hours a night became The Entire Purpose Of My Life. Along with, oh yeah, traveling to Illinois for Ebert Fest, and covering the Tribeca Film Festival, and writing my first reviews for Roger Ebert. I mean, it was insane. But I was able to do it. I had to clear the deck. All I did, honestly, all I did during those two months was 1. Write and 2. Exercise and work on getting 8 hours of sleep a night. It’s not rocket science. But sleep deprivation is a gigantic part of the illness and it is how it introduces itself and it is how it re-trenches itself.

Sleep recovery was the real key for me. I’ve had a rough winter, again, and it probably has something to do with the lack of light during the winter months. Suddenly I was backsliding, I was only needing 5 hours of sleep. It was ominous. But I was feeling GOOD, I didn’t WANT to course-correct. Why is it bad that I am feeling productive on only 5 hours of sleep? This is the insidious nature of the diagnosis, its seductive positivity, its beauty and clarity. It is nearly irresistible. A siren call. But I remembered, yet again, my SWAT team family, and I remembered, yet again, that this is the first year where I actually have had some distance from my own condition (that I didn’t even know I had) – where I can actually SEE it. By June, July of last year, I was honestly baffled that I had lived the way I had lived for as long as I did. I also finally, finally, could understand why the doctors were so amazed that I wasn’t an alcoholic, a drug addict, or a “WHORE!”, that I managed to have a job, that I was responsible with money, blah blah. The more I understood about this monster, the more I understood that my “white-knuckling” it, as awful as it always was, saved my fucking ass. I am freakin’ IRON MAN.

But I don’t want to be Iron Man anymore. Being Iron Man ruined my life. And, besides, Iron Man was breaking down anyway and getting tired.

The last time I remember crying, wildly, for both no reason and for reasons of gigantic nameless existential dread, was Valentine’s Day of last year. I walked down 10th Avenue on a grey morning, and I was that person you see, in public, crying. I held it together until I got home, and my mother had sent me a Valentine’s Day gift, little socks with hearts on them, and I threw myself on my bed and cried for … hours. Literally. Hours. Passed out there.

I look back on my own blog and see that I actually did a couple of posts that day, in the morning. Exhibit A of White-knuckling.

I consider that Valentine’s Day an important marker. I know I will obviously cry again, and I have certainly cried since then, but crying like that? I know now what it is. It has fear in it, misery like that, it is filled with fear, the pain is so great that it is frightening. And THAT I don’t want anymore. I no longer will dig my heels in to defend it, or say “These are my FEELINGS. Stop telling me to not have feelings.” No. Those are not my feelings, that is ILLNESS wreaking havoc on my body and spirit. There is legitimate sadness and then there is illness-sadness, and illness-sadness can actually be fought against and combatted, although you need to learn the tools. Which I have been learning and practicing ever since I was booby-hatched into treatment. You have to be willing to say “No” to certain trains of thought, you have to learn how to separate out what is your personality and what is the illness (super hard, especially if you go undiagnosed as long as I have), and you have to be firm with yourself in avoiding dangerous areas. This is all tied up in so much else, basically you have to feel like you are WORTH being saved, being healed, being helped. It’s a whole paradigm shift, and it didn’t come overnight and I am still working on it. But not alone. I could never have done one second of this alone.

I am coming up on a year now of getting the diagnosis. Things are good now, but I am still chastened enough by the illness to respect it. I must never lose that respect. But I am also, tentatively, trying to befriend it. And not fear it. Just get to know it a little bit, get to know how it operates, and continue to keep in mind that NOTHING is possible if I don’t get at least 8 hours of sleep a night.

I salute my other comrades in illness, those who have suffered similarly. I know what it means. I know what it feels like. I know the agony.

I have decided to share some of this because my doctor encouraged me to write about it, and I also actually just felt like writing about it. I know there are people out there who understand, who have been through similar things (if not in the particular details), and so it helps to express it. Maybe my words will find you. Maybe they won’t.

Hello Sheila, long-time reader here. Thank you so much for sharing this. In a culture with such vicious stigma about mental illness, it takes BALLS to share this, and I respect you so damn much for that (added to the roughly million other things I respect about you).

The timing of this piece really resonates with me. A couple of years ago, I experienced a quick and temporary lift when I first went on antidepressants, followed by a frightening downspiral lasting a year and a half. Went off of them for about six months (without any psychiatric oversight). Just two weeks ago I went back on antidepressants and within days I was walking on air. My sudden energetic cheerfulness spooked the people close to me, and I didn’t understand why they were so freaked out — I felt great!! Then I PLUMMETED. When you used the imagery about how, for a certain population, antidepressants “take that which is at the bottom of the ocean and fling it up into the stratosphere in one fell swoop,” my jaw fell to the floor and remained there as I read the rest of your piece.

I know that this is a hell of a lot for a stranger from the internet to ask of you, but would you be willing to privately share your diagnosis? I have zero percent entitlement to that info and will understand entirely if you don’t share; in fact, I feel pretty boorish for even asking, but I’m desperate for answers. I may or may not dealing with the same illness, I know that’s for a professional to figure out, but I would feel very empowered if I could explore the possibility with my psychiatrist.

Thank you so much for taking the time to read this. I am so grateful for all the time, energy and talent you invest in this blog. Much love for you, and wishing you all the best!!

Oh please feel free to email me – let’s chat. sheilaomalley@mac.com. I’m around and I would be happy to share what I have learned. Everyone’s different of course but this stuff is a wilderness and I would be happy to help.

Sheila, sharing is hard and you do it well. Something was going on, wasn’t sure what, had some thoughts, mostly from my own experience. Hoped/prayed you’d do what you did. Accept the hand your family held out. I (mostly) love families. They are all so different, but the kind, smart ones are the best. You’ve been handling this with such grace. Peace to you, and perseverance. Be kind to yourself. And, yes, sleep is magical. Take care. We’ll be here.

What a scary time that must’ve been. I’m so glad you were able to get the help you needed. I hope things continue to improve and that 2014 is a very good and healthy year for you. Thanks for sharing this with us, Sheila. I wish you all the best.

Sheila, I’m so grateful that such courage, fire, and delight in language cohabit in a woman that loves Elvis as much as you do. I’ve been a reader for many years, and always love the work you do. Thank you for describing so beautifully the storms that so many people survive on the way to treatment. Thank you for writing, always.

Thank you so much, Betsy. Elaine Dundy in her biography of Elvis and his mother has a great chapter about the purpose of Elvis’ music – what it does to its listeners and why (it’s not a typical biography, she goes off into artistic speculation – and since she’s so good and thoughtful it’s interesting rather than annoying). She uses, as her focus, “I Can Help”, a sort of jaunty pop number Elvis recorded in the 70s. She thinks that Elvis’ music “helps” people, in some spiritual un-examined way – and that he somehow understood that, which is why he kept on trucking in a way that other artists might have found monotonous. I’ll see if I can track down the paragraph that closes the chapter – it’s beautiful. Anyway, it resonated with me because he certainly “helped” me. Not as much as my family/doctors have helped, of course – but his music opens up a space, somehow, his music clears the cobwebs – it’s so DIRECT, it’s so ACCESSIBLE.

anyway, his music helped me a lot over the last year. It’s good to have those anchors, those things that work.

Thank you very much for your comment and your support (as well as reading my site) – I really appreciate it!!

Dearest Sheila. You’re always able to bring us along to be right there with you. I was holding on to my chair! I too have been in dogged pursuit of healing. I too have malpractice revenge fantasies! I’ve said an artist expresses things we mere mortals can’t but maybe they also take us right where we wanted to go (and didn’t know it). Thank you – you brave soul unafraid to go right inside and rip it out like a rotting tooth – and take us right along with you. I’m so glad you did.

Ugh!! I just want to hug you, high five you & tell you how much I love and admire you all at once.
I remember when my depression because so suffocating that I finally realized that I needed help. I was so afraid to seek help because I didn’t know who I was underneath that giant blanket of depression. Who would I be after I got better?

I still don’t know the answer to that but I feel a lot better so I must not be that bad! Ha!

Anyway, I still want to be like you when I grow up. You’re my hero. :)

One thing to add, which I should have added: this past December, as I suddenly started sleeping 5 hours a night again, while feeling totally energized and productive (huge glaring red flag) – it was both my doctors who informed me that things were not going well for me. I resented it – I was feeling GREAT. Even after the year I had just had, with all I had learned, it still snuck up on me and I still didn’t recognize it for what it was. I’m new at this. It sucked, royally, and was very disheartening. I felt like they were trying to take away my creativity. (This is, yet again, all “text book”.)

Me to one doctor: “I’m feeling GREAT.”
Doctor: “You are not doing great. You are very sick.”
Me: “Buzz off.”

But I “took the coaching” and had to hunker down, again, and get myself in gear with sleep and exercise (two key factors in combatting the illness).

One of my doctors said to me, very early on: “If I could refuse treatment to people who don’t exercise – if I could get away with it – I would. Exercise is the most effective mood stabilizer in existence.”

It was a startling and radical comment. It seemed obnoxious and mean. It scared the shit out of me. I used to be a runner, I used to be a little Mack Truck of muscle, so I started exercising again after he said that to me.

I am convinced that my illness was managed naturally (for the most part) in the years when I was running so obsessively. I look back and still can see that the illness was operating but I was naturally holding it at bay by running 5 to 10 miles 4 or 5 times a week.

“Befriending” the illness… What a concept!! Much more empowering vs. “fighting” it. Evokes a feeling of being kind to yourself along the path…forgiving, educating, gentle. Just love that image…
And love you more….

Yes! I had a real breakthrough with that. I am so AFRAID of the illness and I can’t be. I have to learn about it, and let myself get close to it so I can understand it. FEAR. But it really really helped.

I shudder to think of trying to do this without doctors. No way could I manage it.

Another beautiful post, beautiful in many different senses. Sheila, I am genuinely relieved that you are feeling better. I also think that parts of your action plan – getting more sleep and eschewing certain substances – are well advised for many, many people. This culture doesn’t like us to rest either mentally or physically, and some of us have very compelling reasons not to rest, as you’ve described above. The way many people compensate is through overuse of their drug of choice. For those people who are more vulnerable than some in whatever way, this is not a good road.

I’m hoping that LongReads or another similar site picks this up because I think it could save lives. Not everyone has a supportive family or group of friends that will help them to see that something is wrong and that it’s in their best interest to seek help even if they’re afraid of it. In those cases, sometimes it’s an Internet “friend you haven’t met yet” who, by telling their story, can help you the most.

Misdiagnosis – sheesh. I shudder to think of how common that probably is today, but again that’s the culture looking relentlessly for the quick fix. I also think the medical community should be required to take an annual refresher course on avoiding confirmation bias in treatment. I suppose I’ll hear about that when my ship comes in. :-)

// This culture doesn’t like us to rest either mentally or physically //

So damn true. I have had to learn ways to slow down, to NOT DO ANYTHING. It is very hard for me. Exercise helps. I like to run – and while I’m out there, I just have my iPod – no phone – nothing but the music and my body and the outdoor weather. It really helps. But boy, once that engine gets going it is so hard for me to slow it down.

I am not familiar with Long Reads. I am very fortunate to have the family that I do – and I feel so lucky that I actually have made it this far. I look back on 2009 and am amazed that I did not commit suicide. Now that I understand the illness, I see what a close call that one was. It would have been horrible. But I was so TIRED. It took a lot of WORK to get this process moving and honestly – as you say – I could not have done it alone. I was too tired. I had to have my bossy pants family step in, my cousin Kerry to set up the conference call with her uncle, my other cousin to set me up with his doc – I just was so disoriented and exhausted I could not have “gotten help” on my own.

I have received many emails already – from people who are either struggling or who have a family member they are afraid for.

I welcome those emails. I welcome talking about this stuff. I am not afraid of it and I know the struggle. And the stigma.

Oh, it’s so hard to know what to say. Your honesty in your writing is so brave. I’m so, so glad that you have such amazing family and friends to help you through this time. I think there are so many people out there in the world that love your writing and YOU (even if you will never meet them, me included), sending such strong support and wishing you the best as you continue to work through this and find the new “normal.”

Thanks for sharing, Sheila. Your candor, your unique ability to express yourself and yes, your charm will go a long way in helping others that might have a similar illness. As Benigni says in ‘Down By Law,’ “You are a good egg!” Best of luck to you in your continuing travails and I’ll be reading.
p

Preston – thank you so much. It is easy to get embarrassed by this stuff – but that is just internalizing the stigma of mental illness. If someone breaks a leg, they put a cast on and they get it fixed. There should not be shame about mental problems. It’s a part of our bodies, part of our makeup, and stuff can go wrong there just like it goes wrong everywhere else. I wish we didn’t make people feel bad for being “weak” or “too sensitive” or say stuff like “buck up” or “think about the orphans in the Sudan” … I get why people say stuff like this but with mental illness it just makes you feel more like a worthless piece of shit!!

Welcome to the crazy club ; )
…..my life has been filled with this kind of detective work…finding out why I’m not “normal” and why the simple things in life are sometimes so overwhelming. I am on some meds for the first time in my life and they are just wonderful —feeling whole again–sleep has always eluded me–great struggles with that since I was young– but now with help, it is getting better.

What I’ve learned through my many imperfect years of struggle in recovery AND therapy–and being married which (kicks everything up a notch): that my DNA had a lot to do with this stuff–pre-programed to be an addict/hyper brain disorder/anxiety attacks. That I can only learn to live with it..embrace it… (for ex: I have bad psoriasis of the nails which my mother suffered from terribly–but I’ve see that I’ve passed it down to my daughter (poor thing) so now I know that Mom got her bad nails from her DNA– nobody was reponsible for this –I’ve just got to take care of it. Likewise my Mom was crazy as a loon. Off the charts–she has passed down some crazy shit to all of her kids. Life they say in The Soprano’s : “whaddayagonnadoboutit?”

At 48 I found the drugs that can finally help deal with my brain chemistry–which, like your stuggles of white knuckling as Iron Man…I’m dead tired of fighting–but it’s just a beginning for me as well.

These things I combate have also given me skills which I can put to great use in my art. Really learning to take the good with the bad. Precision like concentration on many things at once, huge imagination, great ability to laugh and make others laugh, I can pretend I’m someone else which others sometimes pay me money to do which is great.
Another gift, I can tell a story well and connect with an audience (cause I’m incredibly kinesthetic and co-dependent) almost to the point of feeling their feelings–and that makes me an interesting entertainer.

….I say all this because I’m proud of you Sheila.

I admire your honestly which is the greatest gift any artist can share.

Or should I say, the only thing we have to share–which I believe is the greatness in great art–our perception of this crazy journey called “life”

…how true we are in depicting the highs and lows? That is everything — it’s one of the hardest things to do–examine and recognize our faults–acknowledge their existence and to what extent they run our lives and then and ONLY then can we begin to take an action in how to come to terms with it…And I emphasize, as I have painfully come to learn–coming to terms. Not healing. At least for me. This stuff doesn’t heal. Just learning more and making friends with my disease. Accepting myself for who I am. How I’ve been and who I will always BE. My predilections to self medicate and destroy what is good in life. I’m not sure what your diagnosis is..and it doesn’t matter–just hearing about how you’ve turned an important corner–in self acceptance after spending most of your life trying to run from what you can’t escape ( I equate this to a old Three Stooges episode that comes to mind where Curley get’s a scarey balloon tied to his back and runs around a haunted house with this thing connected to him while he yelps and hollers)

…stopping and dealing, is HUGE. And acknowledging that you need help and then accepting it? wow. It is everything and yes, many have left this world not being able to handle these kinds of things –many many many people–

I believe I was put on earth to connect with who I’m supposeed to connect with…that is basis of my art–to show myself. All of me to whoever wants to listen. And hopefully, I can inspire love and healing in others…Everyday I try and look for inspiration. Today you are my inspiration. : ) Thanks for posting. xo

Larry – this is so beautiful and you have shared so much and I am so grateful to get a peek into what it is like for you. Amazing. I love the Three Stooges image. And I love your connection with your creativity – kinesthetic and codependent – my doctors have been leading me in the connection of seeing the connection between the “crazy” and the “creativity” and how it can be worked/used – the positive sides of it – the energy, the passion, the ability to make connections fast, to empathize, to go BIG, to throw caution to the wind – while trying to sidestep the negative side (the inevitable crash). This is part of “befriending” the illness which is terrifying and obviously I am really new at it. It’s hard to change my ways. But I’m scared enough I have to.

One of the other things that happened in Memphis – when I was given a respite from the tailspin – was that my mind was clear enough to understand, in a cold-hard-fact way – that although this particular “episode” was not going to kill me, and I would make it through – I knew, without a shadow of a doubt, that “one of these was gonna get me one day”. I just accepted it. I was not afraid of it.

All of that seems distinctly unreal now that I am “out” – and am able to actually look back on it all. Thoughts like that truly are madness, and it’s weird to not “buy into” them anymore. But my God, the space it leaves in my life – for creativity and fun and connection – it’s amazing. Without having Death leering at my shoulder all the time … I just have so much more TIME. I know that sounds weird.

I have seen this story play out for my partner — not the specifics of course but the general gist. Stunning the way having a diagnosis can free you — how having the language can reframe your history, your capabilities, what you think is your essence. She is also a miracle. I’m so proud of her for persisting with the heartbreakingly arduous grind of recovery. I am proud of you too! And I hope you are proud of yourself — it sounds like you are. Good on you.

Jessie – I am so glad to hear your partner is doing well. It must have been so hard on your end to watch that agony play out.

Reframing is KEY. There is so much freedom in that. There’s that great line from Tom Robbins in Still Life with Woodpecker: “it’s never too late to have a happy childhood.” Not that having a diagnosis changes the past – obviously it does not – but sometimes things can suddenly look so radically different that the entire meaning changes, and you can have some FREEDOM around these traumatic things in the past which were completely baffling at the time.

The response to this post has been overwhelming. I really want to thank everybody for taking the time to respond, to email me, to link to it on Twitter and FB. I didn’t post it for that reason, but I think it’s helpful to talk about this stuff and try not to be embarrassed about it. Not easy to do. I don’t want people to suddenly frame me as “oh, she’s the crazy one” – and see my writing through that light, and have THAT be the filter for how they respond to me. That’s one of the dangers of coming clean, especially in our landscape where mental illness still is so misunderstood. But hopefully I can help combat that perception in my own small way.

Oh my goodness. One of the most powerful things I’ve ever read from you Sheila, and I’ve read a lot of amazing stuff from you. This is great great writing, so truthful and coming directly from your soul and guts. Also, to say the least, that this is very helpful to me, I can’t tell you how much. Thank you so, so much.

Sheila, thank you so much for this. The temptation to “feelings-bomb” (as Captain Awkward might put it) you with how much of a difference your writing has made in my life is pretty huge for me right now.

I’ll try to rein it in, but–you have gotten me interested in so many things I would never have taken a second look at on my own. There is a whole running joke about Dean Stockwell in my house because of your work, for crying out loud. I watch movies differently than I used to, and I never, ever slag off an actor with “oh, they’re just playing themselves.” That’s just a few examples off the top of my head. There are so many more. Oh! I just finished Why Be Happy When You Could Be Normal?–you get the picture.

I mean, I feel like I owed you a lot already. Now this?!

I wish you every success in your ongoing pursuit of health and revere your generosity in sharing it with your readers. It’s NOT easy to talk about this stuff, but you made it look easy. I have always appreciated that you are able to project this grounded, matter-of-fact approach to complex matters. I don’t know whether you always feel that way about them, but that’s what I get from a lot of your work–this sort of acknowledgement like, “Yeah, this is tough stuff, but we’re going in.”

// There is a whole running joke about Dean Stockwell in my house because of your work, for crying out loud. //

I cannot even tell you how happy it makes me, and how happy that my rants about “he was just playing himself” have been passed on in a meaningful way. Thank you for telling me!!

I figure that stuff like brain chemistry and problems are made worse by being ashamed of them and being coy about them. Shame is already in us, and the culture heaps it on our head already. I am amazed that nobody has shown up to “play devil’s advocate” (i.e.: be a douche) yet. I shouldn’t jinx it. It’s amazing how much that shame is internalized, even though we’re smart people and we KNOW that we shouldn’t be ashamed about things that happen with our bodies, dammit.

But boy with mental problems it’s a real game-changer. There is still so much work to be done to get rid of the stigma, and even just to educate people on what the hell it is and looks like. And clearly the medical profession should be in on the joke as well.

I am very lucky that I had the help I did. I am proud and stubborn and I went undiagnosed for WAY too long. I also do not have health insurance. All of these things just start whirling in your head as reasons to just keep white-knuckling on. Thankfully, my family had clearer heads and were willing to just pick me up and fucking carry me for a while. I didn’t even know I needed it.

Thanks again, Ilyka – always excellent to hear from you. I miss your site – are you writing anywhere else these days?

Oh heavens, let’s definitely not jinx it. (But I know what you mean.) That’s where you investing the time to make this a place where you could have the kinds of conversations you wanted has really paid off, though.

It’s funny–I woke up thinking about that sort of douche, and I was thinking about one of their favorite dismissive lines: “Well, by that criteria, EVERYONE’s a little nuts.” I thought, wait: We don’t do that with other illnesses. As you noted above, it’s the shame–that’s what’s missing from a diagnosis of osteoporosis or thalassemia.

But if you put 50 people in a room, gave them red and blue stickers and a sheet of paper and a guarantee of anonymity, and said, “Place a red sticker on your paper if you have had any acute health issues in the last 30 days, and place a blue sticker on your paper if you have any chronic health issues,” don’t you think the most likely outcome would be that you’d have as many stickers, total, of either color, as you had people in the room? You would if they were over 40, anyway. I don’t know anyone older than that who doesn’t have something, acute or chronic. Even the healthiest individual might have pulled a muscle during a 10K run in the last month.

So if we accept that the majority of people deal with “physical” health issues regularly, why do we suppose mental health issues are supposed to be rare? And if they aren’t actually rare, it’s the diagnostic criteria for them that’s suddenly suspect? Huh? That makes zero sense. A brain is as much a part of the body as the heart is. It needs nutrients, oxygen, and care the same as any other organ.

The medical profession should definitely be in on the joke, but that’s another tough issue. I get why they aren’t at the same time that I cannot stand that they aren’t, if that makes sense.

Lack of insurance can be a real killer, literally. Wishing you continued support on that front. I’ve been decades without it myself, but next month I should finally have some. I already know it’ll feel weird, that on some level I became dependent on “I don’t have insurance” as a reason to let things go. Not to invalidate that as a huge factor–it totally is, and I’ll go to war against anyone saying otherwise. But my saying “I don’t have insurance” is less likely to generate resistance from others than “Piss off, I am FINE.” I feel like I’ve lost a crutch–a shitty one, granted, but it was there for so long.

Thank you for the compliment on my writing (eeeee!). I’m not active online for a dozen reasons, none especially interesting, but the primary one being that it stopped making me happy and began making me miserable. I’ve enjoyed just being a reader, and I’ve certainly learned more that way, so it’s working out.

EXACTLY. And then come the inappropriate comparisons. “I have bad days too.” People mean well, I don’t mean to suggest they don’t, and when people get worried they often flail about for something to say. But when someone is getting a round of chemo – is it expected that that person will be 100% and up for socializing and work and all that? No. It is expected that they need help, and they need to scale back. To think that I was going to work in January of last year is insane to me now. If it ever gets that bad again, I am going to the hospital.

People have a weird thing with mental problems. First of all, it is not understood. Second of all, it is feared. So all kinds of terrible things come out as a result of that. It even drills down into the ridiculous and insulting “insanity defense”, where the distinction “knowing between right and wrong” is somehow important. Hello. I’m insane. I know the difference between right and wrong. UGH. Just a huge misunderstanding of what it even IS.

I understand – who has the time to devote to actually studying schizophrenia or PTSD or depression to understand it to the level we need them to? Anyway, there has certainly been a LOT of progress, especially with my diagnosis which is very treatable. Even more so now. There have been all these breakthroughs in understanding – that illness like this moves on a spectrum, sometimes fluctuating. as opposed to a line in the sand.

But these subtleties are why even psychiatrists mis-diagnose.

I should have health insurance by March. Of course mental health stuff will probably not be covered – I will have to be in treatment for the rest of my life probably – and I’m not sure how I will handle that. I need to sell my script, or the book I’ve written – I need to marry well. Something. :)

But since I’m feeling better now, this is now under the column heading “It Will Work Out Somehow”. It just will. I’ll figure it out.

Sheila, I have to say how grateful I am that you got the help you needed and are feeling better. I’ve also been a lurker for years now, commenting very rarely, but your writing has made a huge difference in my life. You made me pay attention to A.S. Byatt, Detour, Paradise Lost, Jeff Bridges, Casablanca, how difficult comedy is, how good writing is hard work, and yes, why not to say “he’s just playing himself”.

Knowing what you shared about you has changed my perspective of your work, but not the way you worried about. I could never look at your writing and think “oh, she’s the crazy one”. I am actually in awe that you were dealing with something so big and was still writing with such clarity, purpose and beauty. I am in awe of your strength. I gained new respect for you, knowing that all you accomplished was in spite your illness.

As a reader, I am honoured that I was given the chance to read this, and I wish you all the happiness and health possible.

Alex – this comment is extremely meaningful to me. I thank you for your comment on your perspective of my work – it seriously had been worrying me. Of course I can’t control what people think. But it is very helpful to hear what it seems like to you.

Just wanted to let you know how much I enjoy many of your posts, particularly the ones dealing with drama and literature. Your acting background informs your comments on drama and film, shedding light on both the product and process of those endeavors in a way that’s is hard to find elsewhere (most actors are pretty inarticulate about how they do what they do), and your love of literature is contagious in your remarks as well. I don’t know if it even figures into your life plans, but I would suggest that you have a talent for teaching, as you seem to have the ability to write with eloquence and insight, you have passion, and you have the required willingness to reframe liberally to achieve clarity. Undoubtedly, you would be one of those rare professors who actually has something to profess, adding a little light to the general darkness.
I say all this not to stroke you, but to suggest that you have much of value to give. When the Black Dog is upon you, I hope you will not lose sight of your potential in at least this particular. And don’t forget, EVERYONE has a nemesis of some kind with which they have to struggle, whether it be depression, fear, or whatever. I’ve never met anyone who has escaped these things entirely. Life is hard, and we’re all wrestling here — some more than others. But when things are darkest, you might remind yourself of Beethoven’s passionate proclamation in what is called his Heiligenstadt Testament, written from the deepest pit of despair: “Such things brought me to the verge of desperation, and well-nigh caused me to put an end to my life. Art! art alone deterred me. Ah! how could I possibly quit the world before bringing forth all that I felt it was my vocation to produce? And thus I spared this miserable life — so utterly miserable that any sudden change may reduce me at any moment from my best condition into the worst. It is decreed that I must now choose Patience for my guide! This I have done. I hope the resolve will not fail me, steadfastly to persevere till it may please the inexorable Fates to cut the thread of my life. Perhaps I may get better, perhaps not. I am prepared for either. Constrained to become a philosopher in my twenty-eighth year!” Beethoven’s finest hour was yet to come. Please hang in there for yours! We’re rooting for you out here!

Robert – thank you so much. I’m reading a book right now where Beethoven factors heavily. Thank you for the link.

and thanks for your ideas about teaching!!

I realize everyone struggles – but again, that has no meaning when you’re in the middle of your own struggle … the nature of mental illness is that it blocks out the light, you can’t perceive it at all. It is persistent and all-encompassing. AND it is coming from inside your brain and your emotional apparatus – it’s not a broken leg which you can look down and see and get some distance from. I’ve been using my brain my whole life. I am used to it. It IS me. How I think IS me. Having to admit that something was off in the wiring was super traumatic and it still is. There are a lot of aspects to this that are so upsetting but it’s all part of the process. My doctors help me through it – I could not process any of it without them.

There is also the fact that once you start to get well, you can get bored with stability. This is also “text book”, and it has happened to me. I missed the highs and lows, even though they were awful in many ways – but so much good came out of them too. It’s very common to miss the illness, especially if you go undiagnosed as long as I have. I have lived this way my whole life. It will take some parsing to figure out what is the illness and what isn’t.

My doctor says, pointing to an empty chair in his office: “We will put the illness in that chair, and we will both sit over here so we can look at it and treat it.”

He said that to me early on and it was so comforting and strange but I have never forgotten it.

Once the clouds clear, knowing about my diagnosis and talking to others who have the same diagnosis is so comforting, and we can swap horror stories, and we all know what we are talking about.

But when people try to compare their “bad patch” with what I’ve gone through … it’s just not helpful. Persistent undiagnosed mental illness over 30 years is a horror show, and is its own thing. I am lucky I have a family who is willing to listen, and willing to help, and also friends who have read up on my diagnosis and ask me questions and are not afraid when I tell them what it’s been like.

It is so helpful when people LISTEN. It helps ME to put it into words and not be ashamed of it anymore.

The shame is so undeserved! Why can’t our society wake up and realize that mental illness is not trivial, voluntary, or bogus, nor is it a sign of weak character? There’s no shame involved in physical illness. but because most people don’t know that mental illness IS a physical illness, they don’t figure it deserves the same stamp of legitimacy.

I understand completely when you talk about how hard it is to get any balanced perspective when you are in the grip of the demon. All seems inescapably hopeless and miserable for as far as the eye can see, and it seems as if the lead in your bones will never lighten. But if you can just begin to glimpse the lie behind that word “seems,” which tries so hard to imitate “is,” it slowly begins to lose some of its power. Thank goodness for all of those good people who are in your corner to provide the help and support to get you over what has apparently been a lifelong haunting. It sounds like you’re doing all the right things. to triumph over this.

In the words of Andrew Dice Clay, “For a chick you’ve got some set of balls!” It takes a lot of courage to wage the battle you are in, and to share it in this way. I root for you to be well, and be happy. You have given so much to me (and everyone else who has found your blog) through your writing, and I want you to know you what a positive influence you are to so many people. I wish there was a better way to return the favor than saying “wish you well”, but for now I guess that will have to suffice.

Incredible. I’m stuck on life handing you these two hugely significant things on the same day…couldn’t write that any better. Naming and claiming all of you. Thank you for sharing this part of your journey, Sheila. Holding it close at heart for you. <3

mmmm….I love your writing, I wish I could read all the posts/replies attached to the very important one you have placed today; I love how you shine the real light on Elvis, the light on real acting, and that you love Elaine Dundy’s book….I do too. Take care Sheila – peace is underrated, paul dionne

Dear Sheila,
Thank you for sharing such a deeply personal and honest account. Over the years as I have read your blog, sometimes a very short poem by Edna St. Vincent Millay has come to my mind and reminded me of you:

“My candle burns at both ends;
It will not last the night;
But ah, my foes, and oh, my friends—
It gives a lovely light!

I admire your intense honesty and your dedication and your bravey as you write and think and read and watch movies and generally experience life deeply. I can’t sustain that type of energy and stay in health, so I’ve learned to pace myself and practice moderation in, well, maybe everything. I don’t know if this is always so good because it does mean less intensity of even wonderful things. But I recognize that you have a particular form of brightness I so admire but can’t emulate. During the year that you’ve just described, I have noticed not a lessening of brilliance or intensity as such in your writing, but instead a depth of careful thought that reflects the richer and more sustainable light you are cultivating through sleep, exercise, and inner stillness. Thank you again for sharing your experience, and for being brave enough to make this journey!

I have always loved that Edna St. Vincent Millay verse. It does seem to say it all.

// During the year that you’ve just described, I have noticed not a lessening of brilliance or intensity as such in your writing, but instead a depth of careful thought that reflects the richer and more sustainable light you are cultivating through sleep, exercise, and inner stillness. //

I thank you so much for that thoughtful observation. Thank you. Thank you for reading.

It’s text book diagnosis that I miss the intensity of the highs. Even being prepared for that going in, warned by doctors, it still threw me for a loop. It feels counter-intuitive to STOP doing things that feel GOOD, ultimately. But I have seen the benefits of exercise and sleep on my moods, and although my experience of everyday life is a bit more boring now – gotta be honest – I understand that this is actually HEALTH. hahaha

My friend Allison said to me that it must be relaxing to have a “lack of insanity” in my life – and she nailed it. I can actually FEEL that lack now – after a year of treatment. It’s amazing how much space that “lack” has provided.

A bit late, I’m afraid, I got this from your article on the Baader Meinhof group yesterday. But it’s never late to say I admire you, and care for you. Since the first article I read here (about Archibald Leach and his mother, just imagine), I couldn’t believe there was a blog like yours, informed, delightful and true to your own voice.
I hope the 2012 crisis is a thing of the past. I hope the pills help, I hope you could find your Leonard Wolff, I’m sure there are people like that even today.
In the meantime, a hug. Please forgive my knowing about it this late.

Also, about befriending it, I am reminded of a physiotherapist friend I went to meet at her workplace many years ago, and she asked “just a moment”, then went to a cupboard, took an artificial leg and gave it to a man in a wheelchair. And she said softly “I’ll give you this leg for you to befriend it before we begin trying excercises with it tomorrow”. I get emotional even now, after 30 or more years.
And I appreciate you more now.